The cystic fibrosis community could hold the key to ground-breaking clinical research through a new initiative, part-funded by the Cystic Fibrosis Trust and the James Lind Alliance, to identify the essential problems facing people affected by CF that need answering.
The Priority Setting Partnership (PSP) for Cystic Fibrosis launches today with an online survey open to the entire community, asking for the questions you have about life with CF for which research does not yet have an answer, such as ‘When should I start airway clearance?’ or ‘What nebulised medication is most effective?’
The PSP team will sort the responses into categories and take out any questions which have already been answered, and then open a second online survey which will allow you to rank the questions in order of priority.
The Trust is funding some of the project through its Venture and Innovation Awards programme, designed to leverage significant external funding for research through strategic investments. Funding has also come from the University of Nottingham and the Nottingham University Hospitals Charity.
Oli Rayner, Special Adviser on Research and Patient Involvement at the Cystic Fibrosis Trust, said: “I am very excited to be part of the PSP for Cystic Fibrosis because it gives those of us who live with the condition a great opportunity to have our say and influence the future direction of CF research. The PSP will also help to make CF researchers and major funders of research more aware of the treatment uncertainties that really matter to us.”
How to get involved
Take part in the survey now and share your expert knowledge of life with cystic fibrosis and the unanswered questions we face. The survey is open until the end of June.
Why not open up the conversation by sharing it on social media, using the hashtag #QuestionCF? Keep up with the latest by following the James Lind Alliance's dedicated Question CF Twitter account.